Appointment sheet
Ampullary cancer (ampulla of Vater)
Prepared with OnCo (onco.cc/prep/ampullary/). Orientation, not medical advice; your team knows your case.
My details
Name
Date of appointment
Hospital and clinician
Who is coming with me
What I know, what is unclear, changes to discuss
Saved in this browserWhat I know so far
What is unclear to me
Changes since last time
My questions
15 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example Histomolecular subtype by IHC, Lymph node status and margin status after Whipple, MSI / mismatch repair, HER2, BRAF V600E, NTRK fusions, KRAS, TP53, SMAD4, APC), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
Ampullary adenoma or early T1 lesion
- 5.For my situation (ampullary adenoma or early t1 lesion), which of the standard options do you recommend and why?
Resectable carcinoma
- 6.For my situation (resectable carcinoma), which of the standard options do you recommend and why?
Adjuvant
- 7.For my situation (adjuvant), which of the standard options do you recommend and why?
- 8.Am I a candidate for FOLFOX (5-FU, leucovorin, oxaliplatin), CAPOX (capecitabine, oxaliplatin), Gemcitabine or related drugs, and what side effects should I expect?
Metastatic
- 9.For my situation (metastatic), which of the standard options do you recommend and why?
- 10.Am I a candidate for FOLFOX (5-FU, leucovorin, oxaliplatin), Gemcitabine + nab-paclitaxel, Pembrolizumab or related drugs, and what side effects should I expect?
Any stage
- 11.Are there clinical trials I could join, for example of FOLFIRINOX / mFOLFIRINOX, Pembrolizumab, Signatera?
- 12.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 13.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 14.I read that “No prospective randomised trial has compared subtype-directed adjuvant regimens; retrospective consortia and the NCCN guideline are the current basis”. How does that affect my plan?
- 15.I read that “Which patients with node-positive disease benefit from neoadjuvant therapy; extrapolation from pancreatic trials is being tested”. How does that affect my plan?
The words I may hear
- Lymphadenectomy (lymph node dissection): Surgically removing the lymph nodes that drain a tumour, both to stage the cancer and to clear any spread.
- Whipple procedure (pancreaticoduodenectomy): The big operation for cancers of the head of the pancreas: the surgeon removes the pancreatic head, the duodenum, the gallbladder and part of the bile duct, then reconnects everything.
- CA 19-9: A sugar molecule shed into the blood by most pancreatic cancers; useful to follow treatment, not to screen.
- Obstructive jaundice and biliary obstruction: Yellowing of the skin and eyes because a tumour blocks the bile duct, most often pancreatic or bile duct cancer.
- Endoscopy (EGD, EUS, ERCP): Looking inside a hollow organ with a camera on a flexible tube, taking biopsies and sometimes treating on the spot.
- Hereditary cancer syndromes: About 5-10% of cancers arise from an inherited gene fault.
Tests and results to bring
Biomarker results to ask for: Histomolecular subtype by IHC (CDX2, MUC2 vs MUC1, CK7), Lymph node status and margin status after Whipple, MSI / mismatch repair, HER2, BRAF V600E, NTRK fusions, KRAS, TP53, SMAD4 (pancreatobiliary), APC (intestinal), CA 19-9 and CEA for monitoring, Germline APC (FAP) where duodenal polyposis is present.
Scans and tests linked to this cancer: Comprehensive genomic profiling, Endoscopic resection (EMR / ESD), Liquid biopsy (ctDNA), MRD / molecular residual disease testing.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Ampullary adenoma or early T1 lesion: Endoscopic papillectomy with surveillance; surgery if invasive cancer or unfavourable features on pathology. (Endoscopic resection (EMR / ESD), Endoscopy (EGD, EUS, ERCP))
- Resectable carcinoma: Pancreatoduodenectomy with regional lymphadenectomy; biliary stenting first only if cholangitis or delayed surgery. (Whipple procedure (pancreaticoduodenectomy), Biliary stenting and drainage, Lymphadenectomy (lymph node dissection))
- Adjuvant: Six months of chemotherapy chosen by subtype: oxaliplatin-fluoropyrimidine (FOLFOX or CAPOX) for intestinal-type; gemcitabine-based or modified FOLFIRINOX for pancreatobiliary-type; evidence is from ESPAC-3 periampullary and retrospective series. (FOLFOX (5-FU, leucovorin, oxaliplatin), CAPOX (capecitabine, oxaliplatin), Gemcitabine, FOLFIRINOX / mFOLFIRINOX)
- Metastatic: Subtype-directed chemotherapy; pembrolizumab for MSI-high; HER2-, BRAF- or NTRK-directed therapy where present; clinical trials. (FOLFOX (5-FU, leucovorin, oxaliplatin), Gemcitabine + nab-paclitaxel, Pembrolizumab, Dabrafenib + trametinib, Larotrectinib)
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.
Answers and next steps
Saved in this browserWhat I was told
Agreed next steps, dates and who to call